“I’ve been mocked, scolded and gaslighted”: a harmed patient’s experience of orthodontic treatment

Summary

In this opinion piece, a patient shares their experience of trying to access support from the healthcare system for debilitating jaw pain. They describe being dismissed and laughed at by doctors and orthodontists, highlight a knowledge gap around jaw issues and outline the need for more accountability in the orthodontics industry.

Content

It is devastating to receive a diagnosis as vague as ‘body part dysfunction’ as it basically means your doctors don’t have a clue. I was unfortunate enough to receive two such diagnoses: temporal mandibular dysfunction (TMD), meaning ‘jaw problems’ and eustachian tube dysfunction (ETD), meaning ‘ear pressure problems’. The last twelve years of my life have been constant physical torture and I have suffered years of misdiagnosis and mistreatment by professionals and systems that I do not believe are set up in the patient’s best interest. 

My story

Twelve years ago I started to get pain and clicking in my jaw joint, alongside strange popping and pressure changes in my ear. My GP dismissed this as ‘stress’ and naively I believed them. My problems were getting worse and worse to the point that it was preventing me from sleeping, socialising or even thinking straight. In constant agony and severely sleep deprived, I began having suicidal thoughts.

I had been going around in circles through the health service. Three dentists had told me my ‘bite’ was fine and three jaw doctors had told me my joint was fine. I was given a diagnosis of ‘muscular TMD’ and several of these professionals implied that I was causing my own health problems through some kind of personality flaw, throwing phrases like “stress grinder”, “neurotic personality” and “psychogenic component” at me. On the ear, nose and throat side of things, numerous scans and endoscopes up my nose found nothing wrong with the pressure tube to my ear. After years of being passed around and having just been handed another nine month NHS wait, I called the same ENT surgeon’s private clinic and they could fit me in the same day. With my life wasting away I began paying for private treatment. I had several courses of antibiotics and even had my tonsils out under the premise that a chronic infection might be affecting the nearby muscles. It made no difference and I was inconsolable.  

At that point, I revisited an issue previously ruled out by several professionals—my teeth. I found a dentist from one of several study groups who claim to treat jaw problems. This dentist had a pressure sensor that you bite on and when he tested my teeth there was twice the pressure on one side of my bite compared with the other, indicating that my teeth and jaw didn’t align. Finally, after several years of going around in circles, I had some evidence of what was wrong. A cone beam computed tomography (CBCT) with my teeth together showed clearly that my bite and jaw were not aligned. This dentist began making me a splint and the moment there was some change to my bite it became clear that my teeth were the cause of my jaw and ear symptoms.

However, little did I know that my problems were just beginning. I am certain that the dentist was simply guessing when making adjustments to my splint. After many adjustments, he was just changing my symptoms and not figuring anything out and he handed me over to an orthodontist with a half-effective splint. 

When I saw this orthodontist, he scolded me for suggesting that orthodontics might have something to do with jaw function. At the same time, he claimed great success treating patients like me. I was concerned by this contradiction so I sought another opinion. The next orthodontist laughed in my face at the idea that the teeth could affect the jaw. The next tried to sell me a ‘tongue training device’. After several more wildly different opinions from professionals I returned to the first orthodontist, doubting his trustworthiness but hoping he was competent. He wasn’t, and left me in a far worse situation than before. It has been over a decade and my bite and my symptoms are worse than ever. 

A culture of victim blaming

My experience of the health service has been consistently negative. I have been mocked, scolded, condescended and gaslighted by the people who are supposed to help me. I joined an online victims group with thousands of members and most of the people in the group went for cosmetic orthodontics and left with jaw problems. Some have biting problems caused by badly done crowns and fillings. Many victims have had multiple teeth pulled out or orthodontic headgear that left them with pain and disfigurement. Small jaws due to tooth extractions are even advertised as a beauty standard in some countries. Orthodontics seems like the wild west.

Inadequate and misleading research

Biting is mechanically complex and I believe the methods used by dentists to diagnose biting problems are insufficient. In my experience, hand drills and articulating paper are inadequate ways of making splints. A visual inspection is only a superficial way of aligning teeth. What the victims need are high quality scans and splints made by computer simulation of bite and jaw. In my opinion this is PhD level mechanical engineering and far beyond dental professors’ abilities. Instead of researching and improving treatment options, they use all kinds of statistics to deny that the teeth affect the jaw and instead blame the patients. Many people don’t feel able to speak up about their experiences or share their concerns, as they are worried about how this will affect their ability to receive treatment in the future or even fear legal action from the professional who harmed them.

I believe that members of the orthodontic industry have built this incredible wall of ignorance around themselves and unfortunately it is getting worse. The current trend in dental research is to claim that splints don’t work as a reason to ignore the whole concept, instead of acknowledging the inaccuracies in making them by hand. All the while, orthodontists are carrying out more and more cosmetic procedures, seemingly washing their hands of the people they harm and abandoning them to a life of suffering.

The orthodontics industry, which advertises ‘excellence’, ‘perfection’ and ‘wonderful patient experiences’ is hiding the suffering of many patients. No one knows how many people have been harmed by cosmetic procedures as no evidence is collected.

No one knows how many people are going around in circles through the health service with debilitating jaw, ear and throat problems caused by the alignment of their teeth and jaw. They are not being diagnosed.

A call to action

I believe that these are longstanding issues as I have met victims who were harmed decades ago who have had no investigation or recourse to justice. An independent Government review is necessary. 

Patients should have the right to a complete diagnostic process and I am still shocked that alignment of bite and jaw isn’t considered by NHS jaw doctors. I would like to see bite pressure sensors and scans of the jaw with the teeth together become a regular part of the diagnostic process. As for treatments, I strongly believe that the current methods of manufacturing splints are inadequate and progress requires the assistance of mechanical engineers. Dental research should not be isolated from outside scrutiny and dental records should not be separated from medical records.

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